Concerns raised by people treated for head and neck cancer: a secondary analysis of audiotaped consultations in a health services follow-up clinic.

PURPOSE: People treated for head and neck cancer (HNC) face various barriers in communicating concerns with consultants. Our aim was to investigate the number of concerns raised between patients using the Patient Concerns Inventory (PCI) and those who did not. The PCI is a 57-item prompt list used in routine HNC follow-up clinics. Additionally, we aimed to examine whether who initiated the concerns differed between groups and the factors that may predict this initiation. METHODS: Secondary data analysis included 67 participants across 15 HNC consultants from specialist cancer centres in Liverpool and Leeds. Seven consultants utilised the PCI and eight did not, assigned by preferential and random assignment. RESULTS: Patients in the PCI group raised on average 2.5 more concerns than patients in the non-PCI group (p < .001). There was no significant relationship between group and who initiated the first concern (p = .28). A mixed-effects logistic regression was found to significantly predict who initiated the first concern in consultations (p < .05). DISCUSSION: The number of concerns raised by patients increased when the PCI was introduced pre-HNC consultation. A number of factors were shown to predict the number of concerns raised in consultations by both patient and consultant. As concerns may not be raised further following the concern mentioned, we propose that the discussion of concerns needs to be maintained by the clinician throughout the consultation and not solely at the start. CONCLUSION: The PCI promoted the sharing of concerns in follow-up consultations between patient and consultant.

Barriers to and facilitators of physical activity in adults living with and beyond cancer, with special emphasis on head and neck cancer: a systematic review of qualitative and mixed methods studies.

PURPOSE: Physical activity can improve health outcomes for cancer patients; however, only 30% of patients are physically active. This review explored barriers to and facilitators of physical activity promotion and participation in patients living with and beyond cancer. Secondary aims were to (1) explore similarities and differences in barriers and facilitators experienced in head and neck cancer versus other cancers, and (2) identify how many studies considered the influence of socioeconomic characteristics on physical activity behaviour. METHODS: CINAHL Plus, MEDLINE, PsycINFO, Scopus and Cochrane (CDSR) were searched for qualitative and mixed methods evidence. Quality assessment was conducted using the Mixed Methods Appraisal Tool and a Critical Appraisal Skills Programme Tool. Thematic synthesis and frequency of reporting were conducted, and results were structured using the Capability-Opportunity-Motivation-Behaviour model and Theoretical Domains Framework. RESULTS: Thirty qualitative and six mixed methods studies were included. Socioeconomic characteristics were not frequently assessed across the included studies. Barriers included side effects and comorbidities (physical capability; skills) and lack of knowledge (psychological capability; knowledge). Having a dry mouth or throat and choking concerns were reported in head and neck cancer, but not across other cancers. Facilitators included improving education (psychological capability; knowledge) on the benefits and safety of physical activity. CONCLUSION: Educating patients and healthcare professionals on the benefits and safety of physical activity may facilitate promotion, uptakeand adherence. Head and neck cancer patients experienced barriers not cited across other cancers, and research exploring physical activity promotion in this patient group is required to improve physical activity engagement.

Development of the stroke patient concerns inventory: A modified Delphi study.

OBJECTIVES: Stroke survivors often have unmet physical, psychological and/or social concerns. Patient Concerns Inventories (PCIs) have been developed for other health conditions to address concerns. Our objective was to develop a PCI for stroke care. METHODS: This was a development study, including Modified Delphi study design, with academic and healthcare professionals with stroke care expertise. In Stage 1, a draft Stroke PCI (Version 1a) was created through identifying patient-reported concerns post-stroke from three previous studies and through expert panel discussions using Nominal Group Technique. In Stage 2, Version 1a was sent to 92 academic and healthcare professionals with stroke care expertise. Participants ranked their top 20 Stroke PCI items in order of importance and provided feedback. Rankings were converted into scores, and, with the feedback, used to amend the Stroke PCI. Two further rounds of feedback followed until consensus was reached between participants. A final draft of the Stroke PCI was created. RESULTS: In stage 1, 64 potential Stroke PCI items were generated. In Stage 2, 38 participants (41.3%) responded to the request to rank Stroke PCI items. The three highest ranked items were 'Risk of another stroke', 'Walking', 'Recovery'. After three rounds of feedback and amendments, the final draft of the Stroke PCI consisted of 53 items. CONCLUSIONS: A Stroke PCI has been developed using patient-reported concerns in previous studies and input from academic and healthcare professionals. Future work will involve gathering further feedback on the tool and exploring its acceptability and usability in a pilot study.

Patient preference for commonly-used, head and neck cancer-specific quality of life questionnaires in the follow-up setting (Determin): A multi-centre randomised controlled trial and mixed methods study.

BACKGROUND: Quality of life (QoL) assessment forms an integral part of modern cancer care and research. The aim of this study is to determine patients' preferences and willingness to complete commonly used head-and-neck cancer (HNC) QoL questionnaires (QLQs) in routine follow-up clinics. METHODS: This is a randomised control trial of 583 subjects from 17 centres during follow-up after treatment for oral, oropharyngeal or laryngeal cancer. Subjects completed three structured validated questionnaires: EORTC QLQ-HN35; FACT-HN and UW-QOL, and an unstructured patient-generated list. The order of questionnaire presentation was randomised, and subjects were stratified by disease site and stage. Patients self-rated the questionnaires they found most helpful to communicate their health concerns to their clinicians. RESULTS: Of the 558 respondents, 82% (457) found QLQs useful to communicate their health concerns to their clinician (OR = 15.76; 95% CI 10.83-22.94). Patients preferred the structured disease-specific instruments (OR 8.79; 95% CI 5.99-12.91), while the open list was the most disliked (OR = 4.25; 95% CI 3.04-5.94). There was no difference in preference by treatment modality. More women preferred the FACT-HN (OR = 3.01, 95% CI 1.05-8.62), and patients under 70 preferred EORTC QLQ-HN35 (OR = 3.14, 95% CI 1.3-7.59). However, only 55% of patients expressed preference to complete questionnaires routinely at the clinic. CONCLUSIONS: Most patients found QLQs helpful during their follow-up and 55% supported routine questionnaires in follow-up clinics. Males and people over 70 years old were the least willing to complete the routine questionnaires and preferred shorter questionnaires (e.g., UW-QOL). Women preferred FACT-HN, and younger patients preferred EORTC QLQ-HN35. Reasons for the reluctance to complete questionnaires require elucidation.

Needs assessment in patients surgically treated for head and neck cancer-a randomized controlled trial.

PURPOSE: To investigate the effect and feasibility of a head and neck cancer-specific needs assessment tool integrated into nursing rehabilitation consultations early in the post-surgical period on quality of life, symptom burden, and referrals for multidisciplinary follow-up. METHODS: Ninety-two surgically treated patients with head and neck cancer were enrolled in a two-arm randomized controlled trial. All participants received nursing rehabilitation consultations prior to discharge, and two weeks and two months post-operative. The intervention group had their needs assessed using Patient Concerns Inventory, while standard care used a systematic questioning approach. Primary outcome was quality of life. Secondary outcomes were symptom burden and referrals for multidisciplinary rehabilitation follow-up. RESULTS: No significant differences were found in quality of life or symptom burden between groups. However, 35% more patients in the intervention group were referred for rehabilitation. The attrition rate was similar in both groups, with a dropout rate of six in each group. No patients declined using the Patient Concerns Inventory. CONCLUSION: The intervention showed no improvement in QoL or symptom burden compared to standard care. However, the results suggest that important needs were identified and addressed. Especially emotional and existential needs, which were accommodated through referrals and professional advice. Nursing rehabilitation consultations using the Patient Concerns Inventory are feasible and may ensure that patient preferences and priorities are incorporated in their care. TRIAL REGISTRATION: ClinicalTrials.com (NCT03443258). Date of registration: May 31st, 2018.

Recommendations for a Patient Concerns Inventory specific to patients with head and neck cancer receiving palliative treatment.

PURPOSE: Patient Concerns Inventory (PCI) prompt lists are designed to capture health needs and concerns that matter most to patients. A head and neck cancer (HNC)-specific PCI was initially developed for follow-up after treatment with curative intent (PCI-HNC follow-up). Patients with HNC receiving palliative treatment (PT) may have different symptoms and concerns to discuss with the healthcare professionals. The aim of this study is to establish recommendations for a PCI-HNC-PT prompt list. METHODS: The process leading to the recommendations for the PCI-HNC-PT was a four-step sequential qualitative study. First, semi-structured interviews among patients with HNC receiving treatment with palliative intent were conducted based on the original PCI-HNC follow-up prompt list. Second, a multidisciplinary reviewing panel revised the PCI-HNC follow-up based on the findings from the patient's interviews. Third, a focus group interview (FGI) with specialized oncology nurses was conducted based on the revised PCI-HNC follow-up. Fourth, the results of the patient and FGI interviews were combined and re-assessed by the multidisciplinary reviewing panel leading to a consensus on the selection and recommendation of items for the final PCI-HNC-PT. The think aloud method was used in patient and FGI interviews to establish face and content validity. RESULTS: Ten patients receiving palliative systemic treatment for HNC were included and interviewed. Face validity and content validity for the PCI list were demonstrated. Patients independently expressed that their concerns and needs fluctuate and change over time and welcomed the possibility of being supported by a PCI prompt list. The patients estimated a PCI prompt list to be relevant or very relevant. No items were found to be unacceptable or inappropriate but were revised to be more precise in their description. Additional items were suggested from the need to be actively involved in their treatment and care. The FGI led to the knowledge that the nurses did not have a systematic approach to communicate on symptoms. The nurses highlighted that the PCI prompt list is likely helpful for addressing symptoms, needs, and concerns that the nurses themselves would not immediately inquire about. The multidisciplinary reviewing panel came to a consensus on items and concerns recommended for the PCI-HNC-PT. CONCLUSION: The idea of a PCI prompt list was welcomed by patients with HNC receiving palliative treatment. The original PCI-HNC follow-up was adapted and has led to the recommendations of items and concerns for a PCI-HNC-PT prompt list. The next phase will be to feasibility test the PCI-HNC-PT in the clinical setting. The PCI prompt list has the potential to help facilitate the concerns and needs of the patients during the palliative treatment trajectory and thereby have the potential to strengthen a person-centered approach.

The Patient Concerns Inventory in head and neck oncology: a structured review of its development, validation and clinical implications.

INTRODUCTION: The Patient Concerns Inventory (PCI) is a condition specific prompt list that was initially developed for head and neck cancer (HNC) and is referred to as the PCI-HN. There have been numerous publications regarding the PCI-HN, since it was first published in 2009. To date, there has not been a review of its development, validation and clinical implications. A collation of relevant papers into key sections allows multidisciplinary teams and researchers to have an overview of the PCI-HN's background, evaluation and utility. This is essential if colleagues are to have confidence in the tool and be able to reflect on how to optimise its use in clinical practice. METHODS: Five search engines were used: EMBASE, Medline, PubMed, CINAHL and Handle-on-QOL for the specific term 'Patient Concerns Inventory' up to and including 1st February 2022. In addition, an accumulation of PCI-HN data of 507 HNC patients was drawn from previous studies in Liverpool and Leeds between 2007 and 2020 and was analysed specifically for this paper. RESULTS: 54 papers relating to the PCI-HN were identified. The review is structured into eight sections: (1) What is the PCI-HN and how does it work; (2) Feasibility and acceptability; (3) Psychometrics; (4) Items selected and frequency (5) Associations with Health-Related Quality of Life (HRQOL) and casemix; (6) Other observational studies; (7) Randomised trial evaluation; (8) General discussion and further research. CONCLUSIONS: As the term PCI is quite ubiquitous and produces many hits when searching the literature, this review provides a very concise and convenient historical context for the PCI-HN and collates the current literature.

Changing trends in the microvascular reconstruction and oral rehabilitation following maxillary cancer.

PURPOSE: The maxillectomy defect is complex and the best means to achieve optimal reconstruction, and dental rehabilitation is a source of debate. The refinements in zygomatic implant techniques have altered the means and speed by which rehabilitation can be achieved and has also influenced the choice regarding ideal flap reconstruction. The aim of this study is to report on how the method of reconstruction and oral rehabilitation of the maxilla has changed since 1994 in our Institution, and to reflect on case mix and survival. METHODS: Consecutive head and neck oncology cases involving maxillary resections over a 27-year period between January 1994 and November 2020 were identified from hospital records and previous studies. Case note review focussed on clinical characteristics, reconstruction, prosthetic rehabilitation, and survival. RESULTS: There were 186 patients and the tumour sites were: alveolus for 56% (104), hard palate for 19% (35), maxillary sinus for 18% (34) and nasal for 7% (13). 52% (97) were Brown class 2 defects. Forty-five patients were managed by obturation and 78% (142/183) had free tissue transfer. The main flaps used were radial (52), anterolateral thigh (27), DCIA (22), scapula (13) and fibula (11). There were significant changes over time regarding reconstruction type, use of primary implants, type of dental restoration, and length of hospital stay. Overall survival after 24 months was 64% (SE 4%) and after 60 months was 42% (SE 4%). CONCLUSION: These data reflect a shift in the reconstruction of the maxillary defect afforded by the utilisation of zygomatic implants.

Head and neck cancer peer-to-peer support and quality of life: systematic scoping review.

BACKGROUND/AIM: The aim of this scoping review was to summarise the current evidence for peer-to-peer support and its impact on quality of life (QoL) in head and neck cancer (HNC). METHODS: Five search engines were used-PubMed, CINAHL, APA PyscInfo, Web of Science and HaNDLE-on-QoL-to look for publications between 1981 and 2020. Adapted PICO (population, intervention, comparator and outcome) and Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) methodology was used. RESULTS: Of the 1408 papers identified, 10 met the inclusion criteria: five qualitative, two cross-sectional, one case-control, one cohort and one quasi-experimental design. There were four common themes: patient experience of peer-to-peer support, delivery of peer-to-peer support, engagement with peer-to-peer support and impact on QoL. CONCLUSION: This review highlights the paucity of evidence with regard to QoL and peer-to-peer support in HNC. It provides a summary of the literature and identifies considerations for clinical practice and future research.

The palliative care needs and experiences of people with advanced head and neck cancer: A scoping review.

BACKGROUND: The palliative care needs of people with advanced head and neck cancer pose unique complexities due to the impact the illness has on eating, speaking, appearance and breathing. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge. AIM: To identify and map out the palliative care needs and experiences for people with advanced head and neck cancer. DESIGN: A scoping literature review following the methods described by the Joanna Briggs Institute. DATA SOURCES: An electronic search of the literature was undertaken in MEDLINE (Ovid), EMBASE and CINAHL covering the years January 1996 to January 2019. RESULTS: People with advanced head and neck cancer often had palliative care needs but there was variability in the timing and access to relevant services. A high prevalence of interventions, for example hospital admissions were needed even during the last month of life. This was not necessarily negated with early engagement of palliative care. Dissonance between patients and family carers about information needs and decision-making was an additional complexity. Studies tended to be descriptive in nature, and often involved a single centre. CONCLUSION: This scoping review demonstrates the complexity of care for people with advanced head and neck cancer and the issues related to the current healthcare systems. Focus on appropriate referral criteria, increased integration and coordination of care and robust evaluation of specific care components seems key. Linkage between research and service design delivery across teams, disciplines and care settings seems pertinent.

What are the underlying reasons behind socioeconomic differences in doctor-patient communication in head and neck oncology review clinics?

OBJECTIVE: To explore socioeconomic status (SES) differences in patterns of doctor-patient communication within head and neck cancer clinics and why such differences exist. METHODS: Thirty-six head and neck cancer review appointments with five Physicians were observed and audio-taped, along with follow-up interviews involving 32 patients. Data were analysed using Thematic Analysis, and compared by patient SES (education, occupation and Indices of Multiple Deprivation). RESULTS: Three main themes were identified: (a) Physicians used more humour and small talk in their consultations with high SES patients; (b) Low SES patients were more passive in their participation, engaged in less agenda setting and information-seeking, and framed their clinical experience differently; (c) Low SES patients had different preferences for involvement, defining involvement differently to high SES patients and were seen to take a more stoical approach. CONCLUSION: Low SES patients take a more passive role in medical consultations, engage in less relational talk and are less likely to raise concerns, but were satisfied with this. Physicians may adapt their communication behaviour in response to low SES patients' expectations and preferences. PRACTICE IMPLICATIONS: A question prompt list may help low SES patients to raise concerns during their consultations. This may reduce inequalities in communication and health.

Balancing patients' fears of recurrence and fears of COVID-19 when considering their preference for review consultations.

PURPOSE: Head and neck cancer (HNC) patients may experience fears regarding cancer recurrence (FoR) and of catching COVID-19. There could be unease for attending hospital clinics for face to face (F2F) examination. F2F benefit in cancer surveillance has to be balanced against the risk of virus transmission. This study aimed to report perceptions of fear of cancer and fear of COVID-19 and to report patient preference for follow-up consultation in HNC survivors during the COVID-19 pandemic. METHODS: The study ran from lockdown in England on 24th March to 29th July 2020. Patients were offered preference to postpone their consultation, to have it by telephone, or F2F. A postal survey was undertaken in the 2 weeks post-consultation (actual or postponed). RESULTS: There were 103 patients. Initial action by consultant and patient resulted in 51 postponed consultations, 35 telephone consultations and 17 F2F meetings, with 10 F2F triggered by the patient. There were 58 responders to the survey and most (39) had a clear preference for one mode of follow-up consultation during the COVID-19 pandemic, with half (19) preferring F2F. A similar response was seen regarding their consultations in general to address unmet needs and concerns, with 38 having a preferred mode, 29 preferring F2F. Serious fears about recurrence and COVID-19 were at relatively low levels with a tendency to be more concerned about recurrence. CONCLUSION: Any redesign of mode and frequency of out-patient follow-up in light of COVID-19 should be undertaken in discussion with patient groups and with individual patients.

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial.

PURPOSE: The patient concerns inventory (PCI) is a prompt list allowing head and neck cancer (HNC) patients to discuss issues that otherwise might be overlooked. This trial evaluated the effectiveness of using the PCI at routine outpatient clinics for one year after treatment on health-related QOL (HRQOL). METHODS: A pragmatic cluster preference randomised control trial with 15 consultants, 8 'using' and 7 'not using' the PCI intervention. Patients treated with curative intent (all sites, disease stages, treatments) were eligible. RESULTS: Consultants saw a median (inter-quartile range) 16 (13-26) patients, with 140 PCI and 148 control patients. Of the pre-specified outcomes, the 12-month results for the mean University of Washington Quality of Life (UW-QOLv4) social-emotional subscale score suggested a small clinical effect of intervention of 4.6 units (95% CI 0.2, 9.0), p = 0.04 after full adjustment for pre-stated case-mix. Results for UW-QOLv4 overall quality of life being less than good at 12 months (primary outcome) also favoured the PCI with a risk ratio of 0.83 (95% CI 0.66, 1.06) and absolute risk 4.8% (- 2.9%, 12.9%) but without achieving statistical significance. Other non-a-priori analyses, including all 12 UWQOL domains and at consultant level also suggested better HRQOL with PCI. Consultation times were unaffected and the number of items selected decreased over time. CONCLUSION: This novel trial supports the integration of the PCI approach into routine consultations as a simple low-cost means of benefiting HNC patients. It adds to a growing body of evidence supporting the use of patient prompt lists more generally.

Disease trajectories, place and mode of death in people with head and neck cancer: Findings from the 'Head and Neck 5000' population-based prospective clinical cohort study.

BACKGROUND: Few large studies describe initial disease trajectories and subsequent mortality in people with head and neck cancer. This is a necessary first step to identify the need for palliative care and associated services. AIM: To analyse data from the Head and Neck 5000 study to present mortality, place and mode of death within 12 months of diagnosis. DESIGN: Prospective cohort study. PARTICIPANTS: In total, 5402 people with a new diagnosis of head and neck cancer were recruited from 76 cancer centres in the United Kingdom between April 2011 and December 2014. RESULTS: Initially, 161/5402 (3%) and 5241/5402 (97%) of participants were treated with 'non-curative' and 'curative' intent, respectively. Within 12 months, 109/161 (68%) in the 'non-curative' group died compared with 482/5241 (9%) in the 'curative' group. Catastrophic bleed was the terminal event for 10.4% and 9.8% of people in 'non-curative' and 'curative' groups, respectively; terminal airway obstruction was recorded for 7.5% and 6.3% of people in the same corresponding groups. Similar proportions of people in both groups died in a hospice (22.9% 'non-curative'; 23.5% 'curative') and 45.7% of the 'curative' group died in hospital. CONCLUSION: In addition to those with incurable head and neck cancer, there is a small but significant 'curative' subgroup of people who may have palliative needs shortly following diagnosis. Given the high mortality, risk of acute catastrophic event and frequent hospital death, clarifying the level and timing of palliative care services engagement would help provide assurance as to whether palliative care needs are being met.

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: baseline results in a cluster preference randomised controlled trial.

PURPOSE: The main aim of this paper is to present baseline demographic and clinical characteristics and HRQOL in the two groups of the Patient Concerns Inventory (PCI) trial. The baseline PCI data will also be described. METHODS: This is a pragmatic cluster preference randomised control trial with 15 consultant clusters from two sites either 'using' (n = 8) or 'not using' (n = 7) the PCI at a clinic for all of their trial patients. The PCI is a 56-item prompt list that helps patients raise concerns that otherwise might be missed. Eligibility was head and neck cancer patients treated with curative intent (all sites, stage of disease, treatments). RESULTS: From 511 patients first identified as eligible when screening for the multi-disciplinary tumour board meetings, 288 attended a first routine outpatient baseline study clinic after completion of their treatment, median (IQR) of 103 (71-162) days. At baseline, the two trial groups were similar in demographic and clinical characteristics as well as in HRQOL measures apart from differences in tumour location, tumour staging and mode of treatment. These exceptions were cluster (consultant) related to Maxillofacial and ENT consultants seeing different types of cases. Consultation times were similar, with PCI group times taking about 1 min longer on average (95% CL for the difference between means was from - 0.7 to + 2.2 min). CONCLUSION: Using the PCI in routine post-treatment head and neck cancer clinics do not elongate consultations. Recruitment has finished but 12-month follow-up is still ongoing.

Socio-economic differences in patient participation behaviours in doctor-patient interactions-A systematic mapping review of the literature.

BACKGROUND: The degree to which patients participate in their care can have a positive impact on health outcomes. This review aimed to map the current literature on patient participation behaviours in interactions with physicians and the extent to which differences in these behaviours can be explained by socio-economic status (SES). SEARCH STRATEGY: Four electronic databases were searched from 1980 onwards using key words related to socio-economic status and patient participation behaviours. STUDY SELECTION: Titles, abstracts and full texts were screened by two reviewers, with the second reviewer screening 20% of all entries. DATA EXTRACTION: Data on year of publication, country, patient population, setting, patient participation behaviour studied, and SES measure used were extracted. MAIN RESULTS: Forty-nine studies were included in the review. Most studies were conducted in the United States, and the most commonly studied patient participation behaviour was involvement in decision making. Most studies measured SES using education as an indicator, with very few studies using occupation as a measure. Many studies did not report on participants' medical condition or study setting. Patient participation in their health-care appointment increased with increasing SES in 24 studies, although in 27 studies no significant association was found. DISCUSSION AND CONCLUSIONS: Current literature was found to be mainly US-centric. Many studies did not specify participants' medical condition or in what setting the study was undertaken. More studies are needed on less commonly studied patient participation behaviours. It would be helpful for further studies to also include a wider range of SES indicators.

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: a cluster preference randomized controlled trial.

BACKGROUND: The consequences of treatment for Head and Neck cancer (HNC) patients has profound detrimental impacts such as impaired QOL, emotional distress, delayed recovery and frequent use of healthcare. The aim of this trial is to determine if the routine use of the Patients Concerns Inventory (PCI) package in review clinics during the first year following treatment can improve overall quality of life, reduce the social-emotional impact of cancer and reduce levels of distress. Furthermore, we aim to describe the economic costs and benefits of using the PCI. METHODS: This will be a cluster preference randomised control trial with consultants either 'using' or 'not using' the PCI package at clinic. It will involve two centres Leeds and Liverpool. 416 eligible patients from at least 10 consultant clusters are required to show a clinically meaningful difference in the primary outcome. The primary outcome is the percentage of participants with less than good overall quality of life at the final one-year clinic as measured by the University of Washington QOL questionnaire version 4 (UWQOLv4). Secondary outcomes at one-year are the mean social-emotional subscale (UWQOLv4) score, Distress Thermometer (DT) score ≥ 4, and key health economic measures (QALY-EQ-5D-5 L; CSRI). DISCUSSION: This trial will provide knowledge on the effectiveness of a consultation intervention package based around the PCI used at routine follow-up clinics following treatment of head and neck cancer with curative intent. If this intervention is (cost) effective for patients, the next step will be to promote wider use of this approach as standard care in clinical practice. TRIAL REGISTRATION: 32,382. Clinical Trials Identifier, NCT03086629 . PROTOCOL: Version 3.0, 1st July 2017.

Exercise program design considerations for head and neck cancer survivors.

The present study aimed to establish exercise preferences, barriers, and perceived benefits among head and neck cancer survivors, as well as their level of interest in participating in an exercise program. Patients treated for primary squamous cell carcinoma of the head and neck between 2010 and 2014 were identified from the hospital database and sent a postal questionnaire pack to establish exercise preferences, barriers, perceived benefits, current physical activity levels, and quality of life. A postal reminder was sent to non-responders 4 weeks later. The survey comprised 1021 eligible patients of which 437 (43%) responded [74% male, median (interquartile range) age, 66 (60-73) years]. Of the respondents, 30% said 'Yes' they would be interested in participating in an exercise program and 34% said 'Maybe'. The most common exercise preferences were a frequency of three times per week, moderate-intensity, and 15-29 min per bout. The most popular exercise types were walking (68%), flexibility exercises (35%), water activites/swimming (33%), cycling (31%), and weight machines (19%). Home (55%), outdoors (46%) and health club/gym (33%) were the most common preferred choices for where to regularly exercise. Percieved exercise benefits relating to improved physical attributes were commonly cited, whereas potential social and work-related benefits were less well-acknowledged. The most commonly cited exercise barriers were dry mouth or throat (40%), fatigue (37%), shortness of breath (30%), muscle weakness (28%) difficulty swallowing (25%), and shoulder weakness and pain (24%). The present findings inform the design of exercise programs for head and neck cancer survivors.

How to evaluate and assess quality of life issues in head and neck cancer patients.

PURPOSE OF REVIEW: Review quality of life (QOL) concepts and most common instruments to be used in patients with head and neck cancer, as well as the potential benefits and limitations of information derived from QOL studies. RECENT FINDINGS: Information from QOL studies can be clinical predictors of prognosis, serve as potential screening and planning tools for clinical care and rehabilitation efforts. Enhancements in computer technology and the advent of tools like head and neck cancer-specific item prompt list will allow for QOL data to be used more easily. SUMMARY: Patients with malignant head and neck neoplasms can present changes in important vital functions related to the disease and its treatment, usually resulting in a negative impact on their QOL. The application of specific questionnaires can be used to measure such impact and the information derived from QOL studies has the potential to be incorporated in the clinical practice to improve the quality of care.

Is social inequality related to different patient concerns in routine oral cancer follow-up clinics?

Oral cancer has a higher incidence in the lower social strata, and these patients are less likely to engage in supportive interventions and report a poorer quality of life (QoL). The aim of this paper is to compare the Patient Concerns Inventory (PCI) responses across social groups attending routine oral cancer follow-up clinics with particular focus on the deprivation lower quartile. The PCI package is completed by patients as part of their routine review consultation with SNR. Patients were those diagnosed between 2008 and 2012. Deprivation was stratified using the IMD 2010 from postcode. Of the 106 eligible patients, 85 % used the PCI. Just over half (54 %) were living in the most deprived quartile, with two-thirds (68 %) of males in the most deprived quartile, compared with 35 % of females (p = 0.004). In regard to number and type of PCI items selected by patients at their first PCI clinic, there were no notable differences in respect of IMD classification. The two commonest concerns were fear of recurrence (43 %) and sore mouth (43 %). The most deprived quartile reported significant problems in regard to mood (p = 0.004) and recreation (p = 0.02), and a non-significant trend (36 vs 18 %, p = 0.09) in stating their overall QoL as being less than good. It is possible to identify the concerns of patients from lower socioeconomic strata as part of routine follow-up clinics. This allows for targeted multi-professional intervention and supports to improve the outcome in this hard to reach group.